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Old 08-13-2019, 08:27 AM
Steve McQwark is offline
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Hospice reassurance requested


My wife entered hospice two weeks ago and I'm hoping to hear some experiences with them that will dial my cynicism meter down a bit. We've had a coordinator, a social worker and four nurses come by so far. They are all nice people, but I feel like they are trying to push services and equipment on us. Things like a hospital bed or a wheelchair or aides to bathe my wife. I'm quite a bit bigger than my wife and we are only in our 50s, so I can get her in and out of bed, and help her walk around the house, and perform her ablutions, but I realize that we might need these things in the future and they are making me aware of what's available. However, another part of me realizes that the company gets paid for providing these services and equipment and the more we use, the more they get paid. I'm hoping some people here will reassure me that hospice has my wife's best interests at heart and my cynical side can go back to muttering under its breath about extended warranties and door-to-door electricity salesmen.
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Old 08-13-2019, 08:46 AM
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I think you're right to be cautious and a bit cynical. Medicine, in it's present incarnation in this country, is a for-profit business. That's not to say that most of the people who work in it aren't dedicated care-givers. I would probably go with "they're trying to make sure that I know all the options available", while keeping tabs on how well they're doing their jobs.
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Old 08-13-2019, 08:53 AM
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What Chefguy says, and also -
  • You don't have to accept anything if you don't want to, and
  • You might need some of the things they recommend later, so "Thanks - I'll get back to you when I need more" is an option.
Good thoughts/prayers/best wishes to you and your wife.

Regards,
Shodan
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Old 08-13-2019, 09:08 AM
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Making her life easier will also make your life easier and less stressful. As her primary caregiver, you may feel overwhelmed because of all you are doing for her. Even though you are able to move her around and help her with tasks, that is taking time away from other things you might need to do (e.g. pay bills, mow the yard, go shopping, etc.). It's totally okay to get support for her even if the only reason is so that you have more time to address your own needs.
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Old 08-13-2019, 09:12 AM
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I've had quite a bit of experience with hospice care, both in and out of a hospital environment. When my wife was hospitalized after a bad seizure episode (brain tumor), she was placed inthe hospice section of the local hospital. She received wonderful care and it was a blessing for the family.

Surprisingly, she recovered enough to be sent home, where I was the primary caregiver. The county hospice then started providing in-home care, with visits by the hospice nurse twice weekly. Again, they were absolutely great. I could not have managed without them. However, they were a non-profit group, so I'm sure that it doesn't correspond exactly to your situation.

When my wife finally passed in the middle of the night, the on-call hospice nurse responded almost immediately. She was great, though it was a bit startling for her to place such a high priority on retrieving unused medications (opiates and the like). I learned later that this was done in part to make sure that the survivor(s) did not abuse them or attempt suicide.

Anyway, we requested donations to the hospice agency in lieu of flowers.
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Old 08-13-2019, 09:13 AM
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Keep in mind you may be an outlier. Precisely because you’re bigger, abler, and younger than most of their clients. They be most accustom to those in their care wanting the exact things and services you feel are not yet required. They may also be motivated by a sincere concern for the caregiver, and easing that burden in any way they can. Again, something likely often an issue for many I suspect. So they’re just serving up, what most people want, very likely.

As long as they take your ‘No thanks.’, and don’t up the pressure, I wouldn’t be too concerned or cynical about this just yet.
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Old 08-13-2019, 09:14 AM
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You don't have to use everything they suggest right away. Those are your options. And believe me, you'll be glad of those options at some point in time. I had at-home hospice for my son. The hospital bed became a necessity because his bedroom was upstairs and he could no longer go up and down the stairs safely. When I needed, I could request a home health aide to stay with him if I had to run errands or just needed a break. She also helped him with bathing, brushing his teeth, etc. She was a huge help. The hospice nurses were amazing. A hospital chaplain stopped by to talk privately with him. I think that was a good thing. She also spoke to us. There was a counselor that came and talked with him and then came and talked to us after he died. He was available to us for a full year after our son's death. We were told to call hospice when he passed. The nurse came immediately and took care of so many hard things for us.

Making the decision to call to set up the hospice was horrible, but they were wonderful to work with - they were angels on earth.

I wish you and your wife comfort and peace as you go through this journey.
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Old 08-13-2019, 09:16 AM
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Quote:
Originally Posted by filmore View Post
Making her life easier will also make your life easier and less stressful. As her primary caregiver, you may feel overwhelmed because of all you are doing for her. Even though you are able to move her around and help her with tasks, that is taking time away from other things you might need to do (e.g. pay bills, mow the yard, go shopping, etc.). It's totally okay to get support for her even if the only reason is so that you have more time to address your own needs.
I concur. I am so sorry to hear about your wife, and anything that helps you and gives you more energy to focus on the quality of life for both of you is a good idea.

On the other hand, if you have real financial constraints and the Hospice people seem oblivious to that, you need to be frank with them and ask for their help prioritizing what you commit to.
  #9  
Old 08-13-2019, 10:22 AM
Steve McQwark is offline
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Thanks for all the responses. This is what I was hoping to hear, well, what I was realistically hoping for. Ideally, I'd like to hear that a cure for dementia has been found and my wife will be okay and I won $100 million in the lottery even though I didn't buy a ticket.
I think a big part of it is hospice itself. It's just making someone comfortable while you wait for them to die. Even though I know there's nothing that can be done, it feels agonizingly frustrating to not be doing more. I just have to keep reminding myself that my job is to make her feel safe and comfortable and that's it. I get wary when I'm feeling hopeless and vulnerable so the reassurances from all of you are very helpful.
And, the people at hospice have been respectful of my saying not yet to things. The nurses have been very helpful in answering my questions and giving me tips and things to watch for, so I'm sure I'll lean on them more in the months to come.
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Old 08-13-2019, 10:31 AM
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Has your wife been referred to a Palliative care Doctor?

They were very helpful with my cousin and coordinated the resources she needed.Palliative care and Hospice can work together.

Last edited by aceplace57; 08-13-2019 at 10:33 AM.
  #11  
Old 08-13-2019, 12:31 PM
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Originally Posted by aceplace57 View Post
Has your wife been referred to a Palliative care Doctor?

They were very helpful with my cousin and coordinated the resources she needed.Palliative care and Hospice can work together.
No one has ever mentioned a separate doctor, so I'm not sure. There is a doctor who is part of the hospice team, would that not be the palliative care doctor?
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Old 08-13-2019, 01:00 PM
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I had a bad experience with the first hospice assigned to my husband. People kept telling me "Oh hospice is so wonderful!!" but something felt off. I was caretaking alone and needed help but couldn't shake the feeling. My sister's partner, who had done hospice nursing, came to my house the next time the hospice nurse came. She agreed that the nurse was just wrong & told me I did have the right to fire that hospice & get another.
It didn't come to that but I did fire the nurse.Things got somewhat better, and of course he died anyway, but don't forget you must act as advocate always & don't let stories about other people's wonderful caring hospice experience sway you. There are shitty people working in hospice just like anywhere else.
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Old 08-13-2019, 03:31 PM
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Originally Posted by Steve McQwark View Post
I think a big part of it is hospice itself. It's just making someone comfortable while you wait for them to die.
There's no "just" about it - giving her the best possible quality of life for the time she has left is a huge thing. When I've had to sit beside the dying in this last months and weeks I've viewed it as giving them the last and most important gift I can give them.

Hospice is NOT giving up - it's changing the goal. When it became clear that my husband's cancer was terminal we didn't "give up" fighting, we changed the goal of our fighting. Instead of struggling for a cure that was not going to come we struggled for the best for him in his time left. Hospice is about quality, not quantity.

Quote:
Even though I know there's nothing that can be done, it feels agonizingly frustrating to not be doing more.
I think every caretaker ever has felt that way at some point, and some of us on a frequent basis. Would it help to tell you that's a perfectly normal and understandable feeling under the circumstance?

Quote:
I just have to keep reminding myself that my job is to make her feel safe and comfortable and that's it.
You forget something there.

Your job is also to take care of YOU. Because if you don't take of you, can't take care of anyone else. You're starting a bit of a marathon here, you need to pace yourself and take care of yourself or you are going to break down. One reason hospice is offering you so much is so you know you have resources. Don't be afraid to ask for help. Don't be afraid to accept help, even if you don't feel you're quite at a point to need it.

Quote:
I get wary when I'm feeling hopeless and vulnerable so the reassurances from all of you are very helpful.
It's good you're reaching out.

This is part of you caring for you. It's very important you have someone to seek reassurance from, to give you new hope when you need it. It can be on-line support. It can be a counselor or a social worker or clergy or a friend. I found I needed all the support lines I could get.

Ask about respite care - that gives you, the caregiver a break and lets you recharge. It's very important. It's actually vital.

Quote:
And, the people at hospice have been respectful of my saying not yet to things. The nurses have been very helpful in answering my questions and giving me tips and things to watch for, so I'm sure I'll lean on them more in the months to come.
Good.

They are also probably concerned that you do not over-extend yourself either physically or emotionally. If you're strong and able that's great, but consider that it's more important than ever that you not become injured or sidelined. Consider getting equipment BEFORE you absolutely need it.

But also be cautious - sometimes there are limitations to what you can get. For instance, I discovered that if my husband's insurance provided a walker they would not provide a wheelchair for at least two years after that - wow. So I accept a gift of a walker from some friends and kept the wheelchair option in reserve. It turned out we didn't need it, but if we had....

Talk to the nurses, the social workers, everybody about all aspects of caring for your wife and yourself. Good luck, I wish both of you the best.
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Old 08-13-2019, 03:32 PM
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Originally Posted by Steve McQwark View Post
No one has ever mentioned a separate doctor, so I'm not sure. There is a doctor who is part of the hospice team, would that not be the palliative care doctor?
Ask.

The only way to be sure is to ask.
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Old 08-13-2019, 05:21 PM
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Hugs to you, Steve.

The nurses, etc. are telling you about these services and equipment because they want you to know that they are available for your benefit and hers too, NOT because they're interested in making more money.

It's best that you know about them, and take advantage if you feel you want or need them, before things turn into an emergency and/or you injure yourself in the process of caring for her. Do not hesitate to get these goods and services if you need them.
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Old 08-13-2019, 08:15 PM
Steve McQwark is offline
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Again, thanks to everyone for the kind advice. I knew the Dope was a good place to turn to.
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Old 08-14-2019, 05:08 AM
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I'm sorry to hear about your wife.

My mother had terminal cancer and she agreed with her doctor to spend her last week in a hospice. The doctor guaranteed no pain (morphine drip) and Mum would simply 'drift away'.

The hospice was a single bedroom in the local hospital with a lovely view of some gardens.
The staff were really kind and Mum could have regular visitors (she played some bridge, read books and slept.)

It was really dignified and she passed in her sleep.

Since we have UHC here in the UK, there was nothing to pay (all prepaid by our taxes.)
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Old 08-14-2019, 07:42 AM
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Our experiences w/ hospice were consistently positive. As I recall, in order to qualify for hospice, you had to forgo certain other types of treatment. It requires an acknowledgment/acceptance that death is somewhat imminent. So, in a wau, it very much IS easing the way towards death.

Different hospice services might appeal to different people. For example, when my MIL was in hospice, they mentioned that counseling was available to family members. My SIL rejected the idea out of hand, while my wife found it useful (in part, to figure how to deal w. her sister!) So they don't know - and aren't making any assumptions - as to which parts of the menu YOU are interested in.
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Old 08-14-2019, 07:24 PM
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Steve McQwark, if you don't like the care team, you can find out from your local hospital if there are others. My dad's on hospice too, and even in tiny New Hampshire we were given the option of three different hospice services.

And Dad's experience hasn't been like your family's, at least in regards to pushing any equipment or services on him. He's getting worse and finally decided that he'd like to see nurses twice a week, but he wasn't pressured into it. The pastor who visits was also something he opted into, and so far the only equipment we've gotten through them is to switch his O2 over to the company they work with instead of the one he'd been paying via his now discontinued health insurance, and a shower seat. Frankly, I wish he'd agreed to a hospital bed when he first got out of the hospital this last time, because I think it'd help him sleep now but so far he's continued to refuse it despite having increased difficulty sleeping while entirely prone (though a wedge shaped pillow I bought him is helping).

I'm sorry to hear that your wife hasn't seeing a palliative care doctor. Dad's was a great advocate and one of the people who helped get hospice approved after his heart attack in March. I don't know if it's too late now to engage one - Dad hasn't seen his since he stopped having doctor's appointments. I'm not sure if it's because her time isn't covered or because this particular doctor doesn't do house calls, or there's nothing more she can do for him now that hospice writes his prescriptions...Still, it's worth looking into.
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Old 08-15-2019, 10:32 PM
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I remember bristling at the initial hospice briefings as my husband's battle with cancer wound down. Terrible first encounter. I felt my concerns as the caregiver were totally ignored and they were trying to market services to my husband who was really unable to make rational decisions. I got over it, but it was a rough patch. Knowledgeable people repeatedly encouraged me to give them another chance. I'm glad I did. I'm wondering if your experience (and mine) of being put-off by the initial encounters is, perhaps, a common one?

The actual assistance from hospice staff was so wonderful I don't have words. They helped me care for my husband at home, guided me to finding equipment, etc. We finally were over-stressed and moved him to in-patient hospice. Oh how I wish we had done it sooner. The room was enormous, allowing two or more family members to sleep there as well as my husband. Being relieved of the hour-by-hour custodial care left us energy to enjoy the lucid moments and comfort each other during his last earthly days. The staff at the hospice care center were able to answer countless questions we had.
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